Sunday, August 31, 2008

He's an old man, now...

So, The Wife & The Boy were in the bedroom, giving him some relaxed Crazy Baby time, when I hear, "Oh, my God! Musical Daddy! He called Band Momma!" He had hit a sequence of buttons on my cel phone (don't ask how he got it - I don't remember leaving it anywhere) and called the mother of two of my students. They had started singing him Happy Birthday when he hung up on them... "The most entertaining call I've gotten in quite a while," Band Momma said when I called her back to apologize.

Silly baby. You can't talk on a cel phone until you can talk, period!

Had a very nice day today. The Boy slept in until around 8, and we played for a while surrounding breakfast. Grandpa took him for a walk, and I laid down for an hour. The Wife handed The Boy to me while she was putting lunch out on the table - sandwiches and bagels from yesterday. By the time she got back (less than two minutes later), the two of us were asleep and stayed that way for a little over two hours. I couldn't help it - he crawled over to me, put his head on my belly and his thumb in his mouth, and fell asleep. I couldn't move - don't wake sleeping babies, you know - and thus fell asleep. The deal was sealed about twenty minutes later when he rolled upwards and snuggled into my chest.

LOVEloveLOVE the smell of baby & baby hair. Nothing like it in the world. It's the most relaxing, intoxicating scent that I've ever smelled, this side of my wife. Smell is such a powerful scent, and a person's smell - not body odor, mind, but their natural smell: soaps, shampoos, skin, breath - is a powerful thing, particularly when it's someone you love.

We went up to Uncle P's for a swim and a meal. It was a last-minute party-type gathering, and something Uncle P had said really stuck to me: "If I had known that I wouldn't see you guys until after the surgery, I would have given him a bigger goodbye kiss." I'm lucky that my brother loves my son as much as he does!

Ah. One more lesson plan to do for my math class, then I can focus exclusively on my music stuff for the next couple of weeks - surgery notwithstanding. That'll take me until midnight, or so. Time to stop procrastinating and spending money - just bought an Oscar Peterson album for $2 on Amazon and a Mark Knopfelr album for $8 - and get to work.

Saturday, August 30, 2008

It's my party, and I'll cry if I want to...

The party was a smashing success, no doubt about it. My brother & his family came, my father & his lady friend came, my in-laws & my brother- and sister-in-law came, and Band Guy & his wife & infant and Guidance Man & his wife & youngest daughter came. So, The Boy had two friends (a slightly younger boy and a year-older girl) and lots of family here. There was lots of food, lots of cookies and cake and lots of laughter and playing! The Boy's lunch was vegetables and tofu, because he was snitching cake, cookies, chips and such from people's plates.

Funny story: he & I were sharing pretzels. I leaned in and said, "Mumumumumum" to him, and he offered me one of the pretzels he was eating. I thought that that was immensely cute.

Everyone was very generous towards him, presents-wise, and all brought appropriate gifts. Usually, at least one person will bring a gift that has you scratching your head and wondering what they were thinking... not in this case! He got lots of neat toys and clothes, most of which will be perfect for the wintertime. He also showed off a little bit, doing his walking on the walking toys and doing both playing and the gravity game with his favorites. The "I'm ONE year old today!" button was also a big hit.

He took a really nice nap from 12:30 until 1:45, which was perfect. He also fell asleep around 4 and stayed asleep until around 5:30 or 6. In the middle, he was a bit overstimulated - the combination of lots of people, lots of noise and lots of crap that he was eating. He and I went into our bedroom and played for a little bit, away from everyone. (We played the "Daddy hides toys on top of his head" game, which is always a big hit. The funny part this time was that he started putting toys on top of HIS head!!!)

So, thanks to all who've send gifts and birthday wishes. We're going to be trying to get thank-yous out as quickly as possible, but... well... you know. It's going to be a crazy week, what with the traveling to Philadelphia and school starting and everything.

Friday, August 29, 2008

Partypartypartypartyparty!!!1!!!1!!

The Boy's birthday party is a scant 16 hours away. The house is cleaned (still needs to be vaccuumed / Swiffered, and the bathrooms still need a wipedown, but...), we've got most of the food and drink and the only things remaining on the floor are The Boy's toys. We've got a birthday cake from the local kosher bakery, lots of bagels, lox & cream cheese & other similar cold foods, lots of juice and soda. My prediction is that nobody will disturb the layer of dust on the alcohol on the bar, although - one never knows.

My brother & his family are coming from North Jersey - so's my father. My brother-in-law and my sister-in-law are coming from Maryland. My wife's parents are here - mom-in-law since last weekend, dad-in-law since today. The Guidance Counselors are coming with their young girl, and Band Guy is coming with his baby boy. Small, intimate crowd of wonderful people. I don't really NEED to have a spotless house... particularly considering that, like, my kid's got cancer and we've been dealing with chemo & surgery issues... but I know that my father keeps score.

The Italian Festival is down the block this weekend. We went last year - it was The Wife's first trip out of the house after she got home from delivering the baby. It was a fine little outing - we walked around the place two or three times, then walked back home. Neither one of us was in the mood for fried food, and we didn't know anyone in town. Not that we know anyone this year - except for a few friends that we've made at the park and such. My assumption is that, since I'm teaching in the next town over, we'll have more friends there next year; also, as The Boy grows up, he'll have lots of friends there. We're probably going to go tomorrow night, after the party, or Sunday night. Not Monday night, likely - that's a school night, you know? And, next week is going to be nucking futs, with the surgery and the travelling to Philadelphia and all.

Sailing to Philadelphia...

Mark Knopfler is a seriously under-rated songwriter. Since he left Dire Straits, he's let out three or four amazing albums. Interestingly enough, he's been playing with some of the guys he played with in the old group - he just changed the style of play. They're amazing songs, all told - I can't say enough good things about them. The second album is called "Sailing To Philadelphia," which is a wonderful song.

The latest news is that The Boy will be headed to the Children's Hospital of Philadelphia for his surgery. Apparently, the surgeon there is the local expert and has a load of experience doing partial nephrectomies (kidney removals) while doing the least intervention damage possible. This means that this guy is the best chance to keep the most kidney possible.

We're really happy that things are going like this. I'm happy that the best surgeon for the job is going to be operating on him. I'm happy that the last of the tumor is going to be removed from his body, so that the chemo will be working on prevention instead of treatment. This is all good stuff.

He'll be checked in to the hospital on Wednesday for testing and examination, and the surgery will happen on Thursday morning. We hope he'll be home on Sunday, but who knows? The last time, he had the huge tumor removed on Thursday and left the PICU on Sunday and was home on Thursday. I'm hoping that he'll be home earlier, considering the start of the school year.

It's a difficult time. I know that everyone has been so supportive of us, in regards to taking the time from work that I need. It's just that it's the start of a school year, in a new job, in a position of immense responsibility to the marching band. I know that none of it is important in relation to my son. I know that work takes a far less important thing that helping my baby heal. It's just... well... you know. I'm not programmed to put the work aside.

It's also really, really scary to be going to a new hospital. I know that CHoP is a great hospital, and they have family sleep rooms, and the Ronald McDonald House has places for us to stay as well. But, it's a new place that we're really unfamiliar with. Plus, it doesn't have the wonderful ability for us to go home to take a shower or make phone calls or just, simply, sleep in our own bed. (Or wash diapers, but I assume that there's a laundromat reasonably close by.) Being two hours from home makes things difficult.

Sigh. So much for my easy commute to school. It gets replaced by an easy commute to Philadelphia.

Chemo will resume at St. Barnabas, once he returns home. Best guesstimate is a week from Thursday will be week 9.

Thank G-d that my in-laws are here and that my father is in state. I can't imagine what it would be like to do this without them.

Thursday, August 28, 2008

Me-yow.

A little bit of drama at the hospital, as played out in my wife's blog. Head over there for the full report. I can't help feeling more than a little guilty at that, considering that I think that I could have gotten him to drink the contact fluid a little better than my mother-in-law. Whatever - they have some experience with babies, even stubborn ones like my son.

Band camp finished acceptably. I'm very pleased with my teaching throughout the camp, as I felt that I maintained a positive attitude, quick pace and high standard. It helps that this is a "typical" group of band kids - hard working, good attitude and fun-loving. The sleeping accomodations sucked big time - I was sharing a room with The Chief, and I slept on two or three inch-think "mattresses" on the floor. Not the best sleeping situation for me, considering that my knees were killing me when I woke up. (Isn't that weird? I don't know why my knees - which suffer from a muscular issue lately - are hurting after I'm sleeping. Whatever.) But, I survived.

I got home at 11 o'clock last night, and The Boy was asleep. He woke up a little bit, looking for some nursing, and cried at me until I handed him off. He wound up with us around 2AM, and he was very happy to see me in the morning! Of course, I was just happy to see him at all. I left early in the morning for New Teacher stuff, and my wife and mother-in-law took him to chemo today.

We found out that the surgery will be next week. He'll be checked in on Wednesday afternoon after lunch. They'll run the tests that they need to run at that point, and he'll be brought in for surgery first thing Thursday morning. If things stay true to plan, then he'll be able to nurse on Friday and be out of intensive care by Sunday. This surgery shouldn't be as traumatic as the last one - the tumor is MUCH smaller, even though they're also going to take care of some inflamation of the lymph nodes caused by the previous surgery.

I hope, caused by the previous surgery. When I hear about new things appearing on scans, I'm a little paranoid.

I got kicked out of the building at 1:30, and I napped with The Boy until 3. We went on our usual walk, which was as fun as usual.

It was difficult being away. I didn't like it at all.

Tuesday, August 26, 2008

Monday, August 25, 2008

This one time, at band camp...

Due to professional considerations, I will not be talking about details regarding work. Of course, I'd never mention a student by name or with enough detail that they could be identified (that's against the law, actually), but my new district is particularly strict about things. I'm fairly sure that my blog is not particularly kosher with them, but if I don't mention work / teaching except as the big activity that I pursue between 7AM and 3PM, I don't think there's an issue.

Anyway, I'm up at band camp right now, and I really miss my baby. I've been away from him before, with the same band on their annual trip (last year to Boston), but I really miss him now. I feel guilty that I'm not there to help my wife and her mother take care of The Boy, because I know him just as well as she does and can help out. (...even though he's a Momma's Boy right now and doesn't want all that much to do with Daddy.) He's a little constipated and backed up due to the dactinomycin-D, and I want to help him feel better.

We had such fun, playing on Friday and Saturday. He doesn't quite understand the whole "chase" game, because when I chase him, he has the tendency to turn around and back towards me or to sit still and wait to be pounced upon. But, the games that we play are an awful lot of fun, and I love waking up to his smiling face and his hugs. (Baby hugs rule.)

And, I'm worried about tomorrow. He's so LITTLE, and the fact that they have to knock him out scares the crap out of me. I want to be there, and I want to be there when he wakes up. I know he won't be in any pain during the scan, and I know that he'll be fine and home by dinnertime. It's still scary and frustrating as hell that I'm up here when he's got his medical procedure at home.

Don't get me wrong - I'm having a great time up here. The band is far out-performing the most optimistic of expectations and is a good-natured and hard-working group of kids! I'm growing more excited about the season as each hour passes. But, I need to be there for my family!

Again, to repeat - the scan is tomorrow. The results will be given to the radiologist, our surgeon and our oncologist. They will be overnighted to Columbus, OH, where the Wilms Tumor guru is located. Everyone is supposed to analyze the results and speak together, then we'll hear from our oncologist on Wednesday. We're expecting: 1) the tumor has shrunk as expected, and he'll be operated on at some point within a week of Wednesday; 2) the tumor has not responded to chemotherapy as hoped, and the surgery will be put off until after week 12's CAT scan (with a likely increase in intensity of chemo, in my best guess and from no info the doctor has provided); or, least probable, 3) the tumor has disappeared due to chemo, no surgery is required & chemo will continue as ordered. The surgery will postpone week 8 of chemo (and everything else) by seven days; there is a probability that the chemo will be altered post-surgery depending on what they find from this tumor.

Ironically enough, the 2-pound tumor was a stage I tumor. That's bad, but not horrendous. The little tumor, that we might be operating on this week, is a stage II, which is a little bit worse. It hasn't spread anywhere, but it's pretty well entrenched. This means that it's a little more complex to treat, which is why things are so well up in the air.

Regardless, I'm heading home on Wednesday night. If I'm not at the hospital on Thursday, I'll be at a new teacher's thing. The Boy's birthday party is on Saturday. Whether it's at home or at the hospital, we'll know on Wednesday.

Wow. Wednesday is going to suck. Last year at this band camp, I was waiting for the telephone call which told me that my wife went into labor. That ended happily. This year, I'm waiting for the call about my son's tumor. G-d willing, this will end just as happily.

Saturday, August 23, 2008

A small cafe...

Tonight, The Wife and I ate at Garlic Rose in Madison. It was tasty and garlic-y; not obsessively so, but more than you'd find in a typical restaurant. Hence, "Garlic Rose." It's a perfectly fine restaurant, even though it took them around 40 minutes post-salads to come up with our entrees. We were there 3 years ago, around the same time - it was summer, but earlier in the summer. It's amazing how much has changed since.

Even looking at the last two months, things have changed immensely. I was just really considering it, over the past few days. For instance, The Boy no longer falls asleep on my shoulder anymore. I mean, he falls asleep on me, but he does it lying prone, across my lap. He just doesn't seem to find it comfortable anymore. He fell asleep on my shoulder last week, while I was lying down on the easy chair, and that was extraordinary because of its rarity at this point in his life.

Little things are different, as he develops. The way that he plays with his toys has changed again. He will play with one toy for a longer period of time. He uses the toys for a couple of different reasons: 1) the sound it makes when banging against the floor or another toy, or 2) because it's something that opens or closes or hides stuff. He likes his Playskool Pop-Up Pals, even though he hasn't figured out how to make them pop up. He will crawl across the room to close them when the little animals are standing up. He loves the Fisher Price walker/truck that the nurses at the Valerie Center gave him, because it makes noises when you bang the buttons and because Daddy and Mommy hide toys inside the seat. He likes his drawer in the kitchen, because there's always something cool hidden inside there. Get the picture?

Other toys he uses differently. He was given a wooden puzzle with three pieces. He holds one piece in each hand and crawls around, slapping the wood against the floor. It makes a nice satisfying "thunk," which he likes. He does the same thing with the plastic cups that we bought at Dollar Tree, but those crack quickly. But, that's pretty much what he uses the toys for.

Some of his balls he will roll around, and he can occasionally be coaxed to roll a ball back and forth between himself and another person. Not too often, and not so long, but that's what he does.

With the next kid, we're not going to buy toys. Just some cardboard boxes, empty plastic bottles and plastic tubs. There's no real need, because that's what they enjoy playing with the most.

He's not any closer to walking or talking than he was. He says "Mama" and "Dada" pretty clearly, most of the time. He hasn't taken any steps since the baseball game, and he hasn't done much more standing on his own. We're not in a rush. He'll move exactly as quickly as he wants. I'd like to be there for the first bunch of steps, and band camp starts tomorrow morning.

On Tuesday morning, The Wife and her mother will take The Boy to the hospital for his CAT scan. At that point, a bunch of things could happen:

1) The CAT scan can reveal that he can go in for surgery this week, and he will likely be operated upon on Thursday or Friday. Maybe the following week, because of the holiday weekend. In that case, he'll likely resume chemo on the following Friday (which is September 5) with week 8.

2) The CAT scan can reveal that the chemo isn't working quite as quickly as we'd prefer, and surgery will be postponed until after week 13. (Week 12 starts the third cycle of chemo, and they want 10 days for it to take effect.) This might result, depending on the size of the remaining tumor and the other indications, in an increase in the intensity of chemotherapy. My personal fear is that this is a likely occurrence, considering the fact that he seems to be showing little to no effects from his chemo. But, I'm a worst-case scenario person.

3) The CAT scan can reveal that the tumor has disintegrated completely, meaning that no surgery will be necessary. This is not a high probability, but it could happen.

4) One or two other things that I >>really<< don't want to think about.

The difficult thing is that I'm away at band camp from Sunday morning until Wednesday night. Thursday morning is the new teacher breakfast, followed by the first time that I'll actually get to see my classroom. Same thing on Friday - my only time to get in my room. Also on Friday, I have my exam for school at 11 o'clock. So, there's a great chance that I'll walk into school completely blind.

Last year at this band camp, I had my cel phone and checked it every five minutes because The Wife was 9 months and 10 days pregnant. This year? Because I'm waiting for results of the tests. They told us that the results won't come back to us until Wednesday, so if we hear about anything on Tuesday, it's either very good or very bad news. The way I look at it, the longer we wait until we hear, the less likely that the news will be catastrophic.

Funny story: we just got home from going out to eat, and we walked in the door to find my baby asleep on my mother-in-law's shoulder. He woke up to nurse, and was watching the baseball game with us. He looked over and saw that my mother-in-law was eating a sandwich, wriggled out of my wife's lap, crawled over to my mother in law and stole half of her sandwich. He crawled back to Mommy and has been sitting on her lap, eating the sandwich, ever since.

Funny little man. To the left is how he fell asleep during our walk this morning.

Week 7

His numbers were good, he got the chemo that he was supposed to get. He's doing better than last week at this time.

I'm sorry I've been away for a few days; I've been at pre-band camp with my band. I'll post more soon.

Wednesday, August 20, 2008

He's an amazing young man!

On a daily and hourly basis, I am amazed at the things that The Boy does. He is developing at lightspeed and changing before our eyes! It's one of the wonderful, rewarding things about being a parent, as most of my readers will understand.

Today, The Boy crawled into the bedroom and stood up at my wife's dresser. She has a tendency to occasionally leave drawers a little bit open; in this particular case, she had some socks sticking out of the drawer, preventing it from closing. He pulled the drawer open, pulled those socks out and threw them on the floor, and promptly closed the drawer on his fingers. I wonder if he knew that removing those particular socks would get the drawer to move?

Probably not. At this point, The Boy seems to be a completely normal 12-month old. (Well, 12 months next Saturday - the 30th - but close enough.) Mentally, he's normal. Gross physical skills, he's normal. (He's not like Hepcat's kid, who started walking when she was, like, 3 weeks old. Or ten months. Whatever.) His fine motor control is extraordinary - maybe the result of the baby-led weaning? Runs in my side of the family, anyway.

He discovered the wonder of the toilet paper roll over the past week. It doesn't work so well when the roll is full, because we like those big, fluffy rolls of T.P. But, when the roll is down some, it spins for him quite satisfactorily. The Wife told me that he figured out how to flush the toilet, but he hasn't done it for me yet.

We finally moved in our new lounge chair, and it's awesome. It's really, really comfortable so far. We found our old TiVo remote, that we lost about two months ago. It was in the box springs of the chair. The chair's out by the curb. Someone will get it.

The lawn needs to be cut, but The Boy's pool is set up. I'll do it tomorrow.

Hasn't been a good week. Gonna be a tough couple of weeks.

Monday, August 18, 2008

Blargh.

Went up to band camp today, with my last job. Man, I love those kids. Top to bottom, they are great young people. The "worst" kid in that band is still a good-natured, easy-going child. I'll take those kids anywhere, anytime, anyplace. It was a good day. I'm starting to feel a little overwhelmed by the course of the school year; it's a lot of work. My Tuesdays and Thursdays, in particular, start with 7AM rehearsals at school, then the school day, then marching band after school, then chorus rehearsals at night, and I'm home at 10:15-ish. That's a LONG day.

Still, it could be worse.

The following words came out of our mouths on Saturday: "Boy, please don't chew on the toilet."

On Friday, he crawled into the kitchen, stood up using our dairy dish cabinet and pulled the box of chocolate granola bars off of the table. He went into the box, pulled a bar out and crawled into the living room. The Boy then proceeded to begin chewing on the wrapper, trying to get at the soft, sweet insides. Smart boy.

Today, when I got home from teaching, he crawled right up to the baby gate to meet me. It felt so good, that he was so excited to see me. We played a little bit of chase game, and a little bit of rough-housing, and some "tackle Daddy" games. He's cute and getting more fun on a daily basis. It's nice that he's really trying to play WITH, instead of just play.

I'm tired. Good night.

Exhausted.

It's 1AM, and I'm still awake. I'm a little delirious because of decongestants right now, and I'm still awake. It hurts to swallow, and I'm still awake. Stupid cold.

And, I have to be awake for band camp in five hours.

Saturday, August 16, 2008

Return to normalcy?

Well, he fell asleep last night at a relatively normal time. Only thing was, he wouldn't sleep in his crib last night. Every time we tried to move him from my wife's lap to his crib, he woke up after a short amount of time. Not a huge deal, as we were resting and cleaning out the TiVo. (Doctor Who is awesome. This season's finale was awe-inspiring and truly fascinating and entertaining.) Again, last night, we were going to head to services, but the three of us fell asleep and didn't wake up in time to go.

One does not wake a sleeping baby without paying the price.

Anyway, we slept this morning until about 8 o'clock and did our usual Saturday morning thing: breakfast at the diner and peruse the farmer's market downtown. It was fine, even though my knee is irritatingly sore. Afterwards, we drove to the Costco stores in Union and East Hanover, chasing down a recliner chair to replace the P.O.S. chair that we need to throw away. The Boy napped in the morning, played HARD before we left, and napped in the car quite well. Right now, The Wife and he are going to Shop Rite. I'm watching the end of the Yankees game before exercising.

It's a difficult thing, trying to figure out why a chemo baby is crying. Last night, it was obvious that The Boy had caught a little bug: his temperature was up to around 99 (it's normally in the mid-to-high 97's) and he was grumpy and cranky. His nose has been running greatly, as well. (Well, why don't you catch it? Hm.) Fortunately, the house is reasonably temperate right now - not too hot, not too cold - which makes life that much easier.

One knows that one has bought into parenthood when wiping the baby's nose with a finger (when a tissue or handkerchief is unavailable) isn't a big deal.

I wonder what's going to happen when I come back to school. I'm a little concerned - the previous director left his job in the middle of the summer, which means that most of the students have no idea that he left. Nothing is more unappreciated than coming to school and finding a new band director. Sigh. I'm sure I'll be okay - I'm a friendly dude, and I have a decent reputation around town thanks to my work with the marching band last year.

I can't believe that the school year starts in a week (with the beginning of band camp). It seems like only yesterday that I was home from school on the first day of school for the first time since... well, 1978, when I was 4 years old. I already miss it: the enforced one-on-one time with my baby is time that I will treasure forever. This past year was a wonderful, relaxing, enjoyable year! Don't get me wrong - I'm looking forward to teaching again. But, it was a very good year...

Friday, August 15, 2008

Strange Days

Every once in a while, I get hit with some mild insomnia. It's part of being human, I guess. Everyone gets it from time to time: nap a little too long in the afternoon, or have a cup of regular coffee after dinner, or sleep an extra couple of hours in the morning, and things get a little bit dicey around bedtime. A couple of years ago, I slept about ten hours in a week, which was really bad. This wasn't so bad: Wednesday night, I was asleep around 4AM, and last night I was up until after 4AM as well.

Last night wasn't necessarily my choice. I'm in the process of finishing up my second pedagogy class - mathematics and pedagogy. I have been working on my last asignment for a couple of days - a lesson plan on using the program "The Geometer's Sketchpad" to draw some polygons and transform them (reflect, rotate & translate). The Wife went to bed around 10:30 or 11:00 last night, figuring that I was going to stay up and finish my work (which was the intention). The Boy was in bed, asleep - the 10 o'clock changing went smoothly and easily. At 11:30PM, he woke up screaming.

To make a long story short, he was awake until 4:30.

Basically, here's how things went: we would snuggle for a little bit, watch some tv (usually the Giffen iPod connector, which plays my iPod on tv) until The Boy fell asleep. When he had been asleep for ten or fifteen minutes, I'd move him - successfully, I might add - into his crib or into bed with my wife. After five minutes, he'd wake up and start screaming again.

By screaming, I mean yelling, crying and carrying on. It was actually kind of scary. He fell asleep at 4:30 and stayed asleep until 6:00, when he woke up again. I stayed awake with him until 4:00, when I traded "duties" with The Wife. She stayed awake with him until I got out of bed around 10 o'clock. Well, they joined me for a nap around 8:30 or 9:00.

We called the Valerie Fund Center to speak with one of the nurses, because they told us to call when we had questions and problems. They told us, basically, that as long as there was no fever (there WAS no fever), we were okay. The vincristine can cause jaw and leg pain, which is likely what it was. We were told that, if it happened again, we could take his temperature and, assuming the temperature was normal, give him some baby Tylenol.

...which we did, later this afternoon, when he was frantically screaming and thrashing and carrying on. This afternoon was also quite a bit scary, as nothing was working to help him feel better. Carrying him around, offering him some nursing, playing games, singing songs - nothing worked. Finally, we gave him some Tylenol and I took him for a walk around the block. When we got home, he slept for three hours.

So, it's likely that he won't get to sleep at a "normal" baby time tonight. That's okay. I just don't want him to be in pain anymore.

Look, I'm not complaining. Going back to our lexicon of terms, we're pretty lucky in the severity of side effects of The Boy's chemo. I know that there are an awful lot worse effects that people suffer, and I know that there are kids that are way worse off than The Boy. I understand that we've been lucky. It's just frustrating that I have to hold him and listen to him scream.

Thursday, August 14, 2008

Thursday = Diaper H-E-Double-Hockey-Sticks

Chemo didn't go quite as planned, today. The Boy's counts (the white blood cell count, which is taken and monitored each week to check for nasty, nasty side effects and increased chance of infection) were low today. They were around 700, and the doctors want the counts up to a thousand, at least, before he receives the next BIG DRUG that he was supposed to get today. Fine. Whatever. I'm easy. The actinomycin gets pushed back one week, but nothing else changes. The Cat scan will still happen on the 26th, even though they'd prefer a full 10 days to let the chemo take effect on the tumor.

And, of course, everything depends on the results of that test. When the surgery takes place is told by that test. Then, the fate of the remainder of the chemo happens as a result of that test - the chemo could be scaled up or back, or remain the same. Depending.

So, he was hooked into an IV to get anti-nausea meds to combat a drug that he wound up not taking, and we were in the hospital from 11 until 1:45. Sigh. What didn't help was that I didn't sleep last night - I was awake until a little after 4 o'clock, for no apparent reason. I didn't eat weird yesterday, and the only caffeine was a 20-oz of Mountain Dew at 6 o'clock.

Ironically enough, I think that the insomnia was a result of my body going off coffee this week. The body has a tendency to overreact to stuff, and I think I was awake because I didn't get enough caffeine on Wednesday. Whatever. I took a nice nap this afternoon, and I'll be awake until after the midnight shift with The Boy in Diaper Hell. The Wife takes 2AM, I got 4, she's got 6 & I've got 8.

All right. I'm procrastinating from doing schoolwork long enough.

Wednesday, August 13, 2008

Take me out to the ballgame...

Last night, my wife, The Boy and I went to see the Somerset Patriots play. I forget against whom they were playing, and I'm too lazy to look it up online. We were there because my chorus was invited by another chorus to sing the national anthem before the game. So, being a sucker for a performance and a ballgame, I accepted. Turned out to be a great move.

The national anthem went fine. Performances like that are always fun and always interesting. Thanks to the Somerset Patriots for letting us sing there; I hope we did them proud! They have a beautiful field and a really good sound system, so it made the job a lot easier. Although, the dude who had batting practice in the cage below the stands was really smacking the crap out of the ball. If that's a double AA-level ball player, I'd hate to be that close to, say, Alex Rodriguez.

The most interesting thing that happened started around the 4th inning. The Boy was playing with a couple of cards from my wife's wallet - specifically, her student driver's license and a copy card. He was standing, leaning against the bleacher chairs while he did this. Every once in a while, he'd forget that he was standing and push off from the chairs, standing unassisted for ten seconds-ish at a time! The highlight of the evening, part one: he forgot that he was standing and took two steps forward to Mommy! Highlight, part two: easy, comfortable standing for about 15 seconds. I missed the first part, saw the second. How cool is that?

(We left after the 7th inning. The game was three hours old at that point. Too long.)

(Now, here comes the people: "Uh-oh! Your life is over! He can stand and walk!" Are you kidding? Our life was over when we discovered that our son needed emergency cancer surgery. Standing and walking are joyful events.)

Tuesday, August 12, 2008

Home again, home again, jiggity jig...

Hey, Paul - yup, Alfred E. Newman stands as tall as ever, and the Coin Castle reigns proudly over the Seaside Heights boardwalk. Very little has changed, except that the arcades have less video games and more "win tickets" games. Why would kids pump money into video games, when they have better versions on their home systems?

The remainder of the trip was quite nice. This morning, we didn't get back to the beach. We were debating about going from 9 until 10, but The Boy was fussy and tired. We packed him up and drove home - took about an hour and a half, as expected. When you vacation from Sunday night until Tuesday morning, the traffic is not an issue.

The big decision today is, should I shave my head & grow the goatee back, or remain face-clean shaven and just trim the hair on top? On the one side, the grey hair and size of the bald spot are quite traumatic for me, but the look is gentler and I like showing off a fine-looking chin. On the other side, the shaved-head look is a lot cleaner and neater, but the wife doesn't like the scratchy beard as much.

Sigh.

I hate making decisions like this. That's why I got married. Professionally, I have no problem making quick and hard decisions; I have no problem, at the drop of a hat, doing what is necessary to get from point A to point Z the best way. In my personal life, I am horribly indecisive. I don't like choosing what's for dinner, I don't like choosing buying my clothing, and I don't like choosing hairstyles. The best part of having a Jewish wife is that I don't have to make those decisions.

More info to follow. I'm sure that you're waiting with baited breath.

Monday, August 11, 2008

Okay, we're dorks...

...but, I understand that. I came to grips with my inner dork long ago. It no longer bothers me in the slightest. What's new this time? Not that much; simply that I bought matching "Seaside Heights" sweatshirts for the three of us. It took a long time to find - like, the tenth store that we searched. But, it's worth it. We have a picture, but no cord to plug into the computer today. Pics will follow tomorrow here and on my Facebook.

The day went as planned. We rested, then walked for lunch on boardwalk. We came back to the hotel and swam in the pool for a little bit, then went to the beach for about 20 minutes - long enough for each of us (no baby) to swim in the ocean while the other kept The Boy from freaking out. (Stupid sand. I hate it so much.) The Boy and I napped while my wife messed around on the computer. It was my favorite sort of nap - he was fussy fussy fussy, and I snuggled him until he stopped thrashing about. He stuck his thumb in his mouth, I took my glasses off and lay my head next to his, close enough so he could grab it with his thumb-sucking hand. It took him a total of about 15 seconds to then fall asleep. I followed suit about 30 seconds later.

Dinner was a nice, long three hour trip out. We walked up and down Ocean Ave. and Boulevard until we finally just decided to eat at a boardwalk place. Then we had custard - The Wife had vanilla, I had vanilla & orange swirled. The Boy had none, except for a little fingertip taste from me. He was indifferent. We bought the aforementioned sweatshirts, and I won a "Nemo" doll from a ping pong ball toss thing. (That would be my years of Beer Pong training, finally aiding my family in a positive manner.)

Now, we're back at the hotel, and I'm watching ESPN Gamecast online. "Snacks" Ponson is pitching for the Yankees, and they're losing 2-0 to the Twinkies. Sigh. Craptacular baseball season. This is just a bad team.

Check out time is 10 o'clock tomorrow. We'll probably pack up the car, hit the beach for 45 minutes after breakfast, then hit the road. See y'all soon!

First time on the beach...

...The Boy was just not havin' it. The sand was quite traumatic for The Boy. He did not like it - not one bit! More to the point, he pretty much spent the entire time sitting on our laps and screaming frustration at us. The ocean water was about 60 degrees, also. He didn't like that, either. To be fair, I just dipped his toes in the water.

(My wife did nix the idea of sending him down the water slides. I think that that'd be fun. She said that The Boy wouldn't appreciate it for a couple of years. Party pooper.)

So, we walked to breakfast this morning, came back and napped for a bit. (Oh, what a week to give up caffeine...) We were at the beach for about an hour. That's the longest that we're going to go this week, because the chemo makes him sensitive to the sunlight. We don't really know what that means, but we figure an hour on, an hour off, is a good way to do it. Boardwalk for lunch, then hotel for naps. Beach again, then rest, then walk around.

Nice, boring, stress-free day.

Last night, we slept three in the bed - which is a glorified full-size bed. (not even a queen-size!) It was VERY tight, but all of us REALLY slept. I fell asleep around 10:15, my wife fell asleep around 10:30, and the baby a little earlier than both of us. We all woke around 7. Longest night's sleep I've gotten in a REALLY long time.

Sunday, August 10, 2008

To the sea, to the sea, see how happy we'll be...

So, I never made it to mass this morning. Cie la vie. The Boy woke up at 5:50, and was pretty much up; by about 6:40, he was jumping on top of Mommy & Daddy to play. I took him inside, and we had breakfast and played and stuff. At 8:40, he fell asleep and stayed asleep until about 10:15. I have a policy of never waking a sleeping baby.

Anyway, we were supposed to wake up in northwestern Virginia this morning - Eagle Trace at Manusset, to be specific - as our timeshare vacation. Unfortunately, what with the whole chemotherapy thing, we cancelled that vacation. Instead, we've talked about going down to the shore for a couple of weeks now. We've been lucky because The Boy's chemo has gone quite well.

This morning, I went on expedia.com, and - wouldn't you know it - there actually was a hotel room in Seaside Heights from Sunday until Tuesday! This was exciting, as it allows us to get away and still get back in time for the baseball game Tuesday night (where my chorus is singing the national anthem). We packed up the car and the baby and left.

We are now on mediocre wifi, but it's still wifi. It's also thundering and lightning-ing out, which means that we probably won't be swimming in the ocean for a few hours. Maybe tonight. We're in our room for a little while, which is fine. I could use a nap.

Pictures - maybe a movie - will follow of The Boy on the beach with Logical Mommy & me.

Saturday, August 9, 2008

Fun Day Today, again...

I know enough about baseball to be a superstitious person. For instance, since I gave away my Lucky Yankees Chair, the Yankees have not won a World Series - instead, they've blown two of them (2001 and 2003) and lost an ALCS in a devastating fashion (2004). So, I would NEVER say that I thought that this week's chemo wasn't as bad as previous weeks, because The Boy has been wonderful and fun and relatively side effect-free. I would NEVER say that, because that would just bring the Karma Police crashing down upon my bald head faster than you can say "Rally Cap."

However, he's kept his appetite quite well this weekend, which is a marked difference from the past two weeks. Today, he had a good chunk of omelette (my feta omelette went over much better than my wife's plain eggs), some bread and some home fries for breakfast; a small lunch; and some hamburger and lots of macaroni salad for dinner. Last weekend, we were really worried and stressed out over the fact that he ate almost nothing. Thank G-d that that's not an issue today, so far.

We had a really nice day today. We did our usual walk to the diner then the Farmer's Market, whcih went really well until we were actually at the market, when I got cranky and tired. This week, I've given up coffee and caffeine: the only caffeine I've had is two cups with breakfast on my birthday and some diet Mountain Dew today. So, by this morning, my body was pretty well shot. I know I'll be better in another couple of days and be through the worst of the caffeine D.T.s, but it hit me today. I was anxious, tired and light-headed, which made for a fun walk home.

Fortunately, The Boy & I napped for an hour or so when we got home. He woke up, and I handed him off to his mother and went back to sleep for another 90 minutes. (Thank you, Logical Mommy!) When I woke up, we left for Uncle B's and Aunt L's house for a barbeque. It was a really, really nice afternoon. There were lots of doggies there - Uncle B's two dogs, Aunt L's father's dog, and Aunt L's sister's dog. That drove my wife's allergies nuts and bugged me a tad - not as much as her, because my allergy meds for my asthma makes it easier for me. The Boy didn't seem to be affected at all, and had some fun (gently) touching them. He played in the grass for quite some time with keys and stuff like that. He charmed everyone there, like he usually does, by being a sweet and wonderful baby. He fell asleep later when we were played "Scene It!" on Uncle B's XBox 360.

Fortunately, much of their lawn was shady by the late afternoon, when we got to Uncle B's. Apparently, the chemo that we're on makes The Boy more sensitive to the sun. We're not planning on finding that out; we put Blanket In A Bottle on him whenever he's going to be out in the sun for longer than a couple of minutes, and we don't take him outside, if we can avoid it, during peak sun hours.

I kind of wonder what "sensitive to the sun" really means. I assume it means that he gets burned more easily and that his eyes are not comfortable in the bright, bright sunlight. Whatever. I don't intend to expose him to either. My wife and I are not outdoors people. (I'm pretty sure that she's not a vampire, but - then again - I'm not sure if I've ever seen her actually exposed to direct sunlight before.)

My ambition is to take The Boy to mass tomorrow morning, to say hi to everyone at my church gig. If I can, great; if I can't, I'm not going to stress over it. We'll see how we feel in the morning.

Friday, August 8, 2008

Diaper Hell...not badly done, this time.

Last night was not the worst night we've had. Thank G-d for that.

Let's see. I changed The Boy at midnight, and I managed not to wake him up. My wife nursed him at 2 and changed him - well, reverse that order. He woke in the middle of the changing, so she nursed him until he fell asleep. At 4, he was awake already - as a matter of fact, my wife kicked me at 3:57 (alarm was supposed to go off at 4:00). I changed him and brought him to bed with us. At 6, she changed him and managed to get all of us back to sleep, and I changed him at 8 o'clock. They stayed asleep for a half-hour longer, then all were awake.

The rest of the day was unremarkable. My wife went to a meeting of a Mommy's Group that she's been a part of, thanks to the webmd.com chat boards. I had a meeting with a guy from Ameriprise Financial, who's going to help us get our stuff together, financially. (...and we still haven't received our hospital bills...) The Boy was awake for the first half hour of the meeting, playing in the playpen for a bit, then getting trouble in the music room for a bit. He fell asleep in my arms, and I put him in his crib for the last hour of the meeting. The rest of the afternoon was spent napping, playing, eating dinner, then getting him ready to go to temple with my wife.

I'll go next week. I'm not a big fan of the Jewish services, because they're long. The normal service is about 90 minutes long; the normal Christian service is about, oh, 50 minutes long. That's a BIG 40 minutes. But, since I wrote an $830 check for temple dues today, SOMEBODY's going to go to temple this week.

Today starts my vacation. I'll probably do some schoolwork next week - math school work, because I want to finish this pedagogy class and the objective test before the start of marching season and the school year. I've got "two weeks" left in the class - meaning, two assignments and a heap of reading to do. (Who'da thunk that I'd actually take around 8 weeks to finish this class - odd, considering that I've taken, like, 2.5 "class weeks" per real week since I started this in November. Still, I should be on track to finish the degree in the next 6-month cycle, unless I get caught in another unanticipated emergency.) But, over the next week, I become really selfish. I'm not doing business, I'm not going to school (except for a meeting with my new principal on Wednesday), I'm not teaching lessons, I'm not talking band in any way, shape or form. I'm just going to: 1) play with my baby, 2) play with my other baby (the bigger one, that I married), 3) play with my Playstation, 4) catch up on my reading, and 5) play with my babies. We might go down to the shore for a bit. Tuesday night, my chorus is singing the national anthem at a Somerset Patriots baseball game. That's it.

Meh. My biggest fear is that Saturdays have seemed to be worse days for The Boy than Fridays. I hope this week bucks that trend.

Thursday, August 7, 2008

Week 5, and the future...

Today was week 5, which was Vincristine and a bunch of blood tests. The doctor told us that, if the CT scan (on the 26th, while I'm at band camp) shows that they can excise the tumor, they would operate that week - not wait a week and operate during the first week of school. On one hand, I don't really care when the surgery takes place, as long as it's necessary, safe and effective. On the other hand, when starting a new job, it's always best to go one week, minimum, before using a sick day.

Granted, everyone with whom I'm spoken regarding The Boy has said the same thing: "Whatever you need to do, we will find a way to do it." But, still. There's helping and there's the realities of a situation. If I become a bother and a distraction, then they are not going to renew my contract, and I'm right back to where I was two weeks ago.

So, the surgery might take place at that point. We'll see. The rest of the chemo went smoothly and quickly this week. The needles were in, the medicines administered and the needles removed in a very short period of time. The van driver was ready to go before we were, so we were home pretty quickly. The Boy slept most of the rest of the afternoon; I napped with him until the 2 o'clock changing, and my wife napped with him until the 4 o'clock changing. We had dinner at home, and The Boy and I went for a walk after dinner.

Today, it really has starting sinking in: this cancer thing is not going to go away. I mean, when the treatment ends, it's not over. This is something that is going to be a part of our lives on a daily basis (for us, anyway; not so much for him. Children are notoriously good for filtering out chunks of their lives). The child life specialist at the Valerie Fund Center said to us today, "Oh, yeah! The Boy will come to our camp when he's 7!"

That's a really, really long time away. That's six years! For perspective, six years ago I had no gray hair; a high school band job; a girlfriend; no house; lived with my father; owned no Mac computers; and didn't have an iPod. A lot has changed in six years. But, six years from now, we'll still be dealing with cancer issues.

He isn't going to be in treatment for that long, L-rd willing. After this 24 weeks of chemo (a total of 27 weeks of treatment, including post-treatment weekly blood tests), we'll have monthly CT scans for quite some time - like, a year or three. Then, they go to bi-monthly, then seasonally. Wilms tumor is something that can - and does - recur in its patients. As a matter of fact, we met a five-year-old girl today who also has bi-lateral Wilms. She's in treatment for the second time.

Completely disregarding how mind-blowingly terrifying that concept is, that tells me that this is something that we're involved with, for the long haul.

And, just think - we haven't even gotten any of our hospital bills yet. This, coming at a time when my car is dying a slow death and our furnace and air conditioner is holding by a thread. Sigh.

Let's see... two months ago, I was preparing for Big Apple Chorus's travel plans to Nashville, interviewing for an elementary school general music job and looking forward to a nice vacation in Virginia (which was supposed to happen next week). It is amazing how quickly life can completely and irrevocably change.

Don't get me wrong: it's worth it. My baby is the second greatest thing to ever happen to me (next to my wife). This past year has been the best of my life, spending each and every day with him. When he smiles at me and / or climbs on me to play, I feel better than I can explain. I regret nothing and would change nothing. Yes, diaper hell is bad; chemo treatments suck; and it rends my heart when I see him suffer. However, he's worth it. I would do that, and MUCH more, to get him healthy again.

Wednesday, August 6, 2008

It was a very good year...

Birthday day was quite good. Boring, but that's not a bad thing. We went to breakfast together at a local diner, then played for a little while. He napped for a bit, then we went for a walk to the comic book store. We got home and drove out to the Sports Authority to get a new, unbreakable water bottle. Here is when things started getting a bit hairy: he started freaking out in the 5-dollar store, big time. He cried all the way home, then cried some more while I changed him. He napped again, and my wife came home from teaching. We all played for a while, then we went for a walk to go to dinner. The soul food restaurant was closed, so we ate at a local Italian place. Came home, then I exercised and did some math work. I'm now watching last week's episode of "The Middleman," which is a fun super-hero spoof.

Boring, boring, boring, and wonderful. And, to make matters better, two points of good news: 1) The Yankees, behind "Snacks" Ponson's 6 1/3 innings of decent baseball, actually WON!, and 2) I got the middle school job that I was looking for. I'm not teaching elementary school anymore, which is GREAT news. I'll be speaking with my new principal soon.

I'm not looking forward to tomorrow. Chemo has been pretty brutal for the past couple of weeks. I think that, maybe, it'll be easier; it's been two weeks since one of the truly brutal drugs. Next week has another one of THOSE drugs, but this week should be a little easier. It took a long time for The Boy to get back to being himself last week.

Man, weeks 23, 24 and 25 are probably going to suck, big time.

Anyway. I'm tired. I'm going to sleep.

Time keeps on tickin'...

I turn 34 years old today - approximately 40 minutes ago, to be precise. That's not old, in a cosmic sense. That's not old, in a human sense. It is old, however, to a youngest child who has always been a tad immature in bearing.

I live a very "young" life. I love video games, and comic books, and science fiction television shows. I'm "up" on all of the latest music and movies and gadgets. I know how to use the latest technology and computer services and stuff like that. I sing and direct barbershop music, which means that there are always guys around who were old when Lincoln was president, which makes me feel younger.

But, I'm not young anymore. I'm 34 years old today.

I know. It's not old. Many of my friends are older; many of my friends are also significantly younger. I've reached the point in life where I'm no longer the "hip young teacher;" instead, I'm just a teacher. I'm not old, I'm not middle aged; I'm also not young anymore.

I have a wife, a son, a mortgage, car payments (well, not anymore - but soon, because my car is a lemon) and a family membership in my local Reform temple and a home in an Episcopalian community up north. My college drinking buddies are all beginning to have children (some have multiples), and, when we get together, a beer or two usually does it for most of us. (We have to drive home, you know. The days of crashing on somebody's floor, or sleeping six to a hotel room, are over. That stuff hurts the back too much.) My father looks on me as a friend, just as much as he looks on me as his son. My students - when they graduate - now feel awkward calling me by my first name, because I'm so much older than they are.

Sigh.

My birthday is going to be a great day, don't get me wrong. We're going to go out for breakfast in the morning. I get to spend the afternoon with The Boy, because my wife is teaching lessons. We might go out for dinner, or we might stay in - it depends on what we feel like doing. I'm probably going to exercise tomorrow, because I feel like it, and I'm certainly going to do some math work. Not exactly what I'd call an exciting day, but - for this old man - it is sufficient.

No toys from my father for my birthday, although he did give me a stress reliever shaped like a boob. My brother's family surprised me at Dapper Dans tonight, with a birthday cake that my father bought - it was really, really cool.

All right. I know I should go to bed, but I think that I want to play some Pixeljunk Monsters. That game is the best $5 I've spent in a long time - LOADS of fun, lots of replayability. I've probably spent 10-15 hours playing it, and I'm only about 60% done. That's a wonderful dollar per hour amount, when you think about it. I'll probably finish the whole thing at around 20 hours, which makes a quarter per hour - close to my best.

(The best was Final Fantasy 12, which was 167 hours of gameplay for $45. I know that the dollars per hour isn't as good as many, but - 167 hours? Come on.)

Monday, August 4, 2008

Not the best weekend.

That about sums it up. This just wasn't the best weekend for any of us. The Boy had a better Sunday than Saturday, for sure, and a better Monday than Sunday. But, on the whole, we've all been better. This was also the first weekend in a while that we were by ourselves, and I'm sure that that was some of the reason. It's a lot harder than we realize to take care of the baby AND to take care of ourselves. When another set of hands is in the picture, things are just that much easier.

Sunday, we went out to breakfast again, because I felt like it. Afterwards, we went to Costco, walked around for a while, and spent far too much money. We don't buy food at Costco because of the whole Kosher thing, but we did buy a new air filter and lots of cleaning supplies. We got home and The Boy slept for a while, then we all went up and met my brother's family at Yogi Berra Stadium to catch a Jersey Jackals game. We were happy to go, because we needed to get out of the house and see some other people for a little while.

Today was an easy day. We had breakfast at home, then played for a while. My wife left to teach a lesson, and The Boy and I napped for a while. When he woke, we took the bike to my new school so I could poke around for a little while. I also had a conversation with my principal, to let her know what was happening with The Boy, because it will influence my schedule in the fall, for obvious reason. We came home, had lunch and napped for a bit, until a surprise visit by Uncle B. It was very, very welcome to see him! Later, my wife's cousins came to visit. They live really close by, but we never see them. The Boy is just going to sleep now, at 10:05 - coincidentally, the time that the Yankees just blew a 4-2 lead. Sigh.

We're still a little overwhelmed. The day-to-day life isn't a problem: The Boy is easy to care for and has a wonderful disposition. Particularly during the summer, we're getting plenty of sleep and have few day-to-day stresses. I'm welcoming the thought of going back to work in a few weeks, because then I'll have something to distract me from the day-to-day grind of dealing with the cancer. We'll see.

I'm tired. I'm going to play some Pixeljunk Monsters and go to bed.

Saturday, August 2, 2008

When is a fight not really a fight?

Yes, I'm again procrastinating from doing reading that I'm supposed to be doing. But, I already spent an hour and a half tonight lesson planning for 3rd grade general music, and I need an emotional break to get closer to adulthood.

This has not been a good weekend so far. The chemo, being a progressive thing, is starting to take root in a negative way. The Boy has added a new "word" to his vocabulary: a mewling, pathetic, angry-sounding cry. This isn't new to this weekend, particularly, but it was his primary mode of communication today. It honestly breaks my heart to hear it - even when he's gathered up into my, or my wife's, arms and given the love and attention that he needs and deserves, there's not a damn thing that we can do to help.

His hair is still there, and that's making me question, internally, his sickness. From a sick, weird place in my subconscious, I wish that his hair would start fall out soon. It's difficult to reconcile a grave illness like cancer with the vision of a happy, smiling child whose hair is beginning to grow. Don't get me wrong: I'm not wishing baldness upon my son. (That's been decided by genetics.) I don't want him to suffer. I'm REALLY not looking for that. But, it's easier to nurse a child back to health who looks sick.

My wife and I had a blow up tonight. The exact circumstances aren't important (I flipped out because of the placement of the bookshelf upstairs, and she told me to calm the heck down), because that's not what the fight was about. We weren't fighting with each other, although L-rd knows that we've done that enough in our time. (Who hasn't?) We're both feeling VERY stressed about the fact that our kid has cancer and he's starting to accumulate the negative effects of chemotherapy. And, again, there's not a damn thing we can do about it.

My wife brought up the question that's been haunting us: "What kind of a cruel joke is this: we're given the most beautiful, most perfect, more precious little boy in the whole world - and then he develops cancer? Who did we piss off, what did we do, to deserve this?" I know that nothing we've done over the past 11 months would have changed this; it was a roll of the genetic dice that came up snake eyes. Sometimes, it's hard to remember that chance plays a huge factor in things.

Then again, I'm a firm believer in G-d's plan. I've had an... interesting... life, in the Chinese sense of interesting. ("May you live an interesting life," is an old Chinese curse.) I'm not going to get into it now, because I do want to get the reading done. But, my life has been interesting. The biggest thing that's kept me going is this: "G-d puts us where we need to be - which is rarely where we think we should be." I know that I'm not intelligent enough to understand G-d's plan. (I'm darn close, but just not quite there. Yet.) I'm not capable of seeing everything, hence the whole "omnipotent" and "omniscient" labels that G-d carries around. I know that there's a reason that I've gone through the things that I've gone through in my time, and why my wife has gone through the things that she's gone through. I know that, at the other end, we're going to have different ideas about life.

I just wish it was a little more apparent. I can't imagine any good coming out of a beautiful boy having such a dread disease. It's frustrating, and it's getting to us big time. At times like this, I'm REALLY not looking forward to going back to work. I can't imagine The Boy being cared for by a stranger when he's going through such a horrible time and a horrible disease. I know that I've been lucky to be hired by such a wonderful place as I've been hired, and I'm thankful for the opportunity to contribute. But, he's my baby, and I love him.

Naked time!

The oncologist at the Valerie Fund Center this week was not our normal oncologist, but the head of pediatric oncology for St. Barnabas & Newark Beth Israel hospitals (the two hospitals are networked together & share doctors in this particular area). He is an Indian man, and one of the things he suggested was to take a page from the East Asians - give the baby more naked time. (If it wasn't for those carpets.... he said!) Basically, the chemo drugs make him more susceptible to fungal infections, such as thrush or a yeast diaper rash. While we can treat those things with medication, the best way to treat them is to prevent them entirely.

This is one of the reasons why we change his diapers so often in the two days following treatment. The doctor mentioned that one of the best ways to prevent these things is to expose his junk to air, otherwise known as NAKED TIME!!!

Now, we don't want much naked time during the immediate hours following chemotherapy, because his bodily excretions are toxic as he works the chemicals through his system. So, this morning was the first naked time that he really got since chemo on Thursday, and he absolutely took advantage of it.

First, he peed in the potty for Mommy. Isn't that great? Smart boy... then, she took him off the potty and cleaned it out, only to have him pee on the floor. Okay. He crawled into the kitchen and was playing in the doorway while I read about yesterday's heartbreaking Yankees loss, and he was "talking" to me. I looked over and thought, "Wow. That looks like his pooping face."

It was.

So, he got an emergency bath. This time, I was smart enough to take the baby to the tub myself, which left my wife cleaning the poo off of the floor. (Bleach, anyone? It's not just an anime.) I kind of congratulate myself on that, except that I realize that she'll kill me when she reads this. Cie la vie. He got cleaned off and replaced on the floor.

Five minutes later, he peed on the floor again, and naked time was officially over.

Granted, at that point, there was no way that he had any fluids left in his system. But, we needed to leave for our usual Saturday - walk to the diner, then to the farmer's market - and he did need clothes for that. Naked babies are certainly cute, but not cute enough for public consumption.

Then, when we put sunblock on him, some got in his eye, and he's still ticked off about that. More on that later - maybe.

Friday, August 1, 2008

...and we're back!

My blog was flagged as a "spam" blog, because the links that I put in made the automated checkers seem like a junk mail blog. So, I wasn't able to post all day today. Not that anything major has happened, but it was still awfully annoying.

Tonight, we received a very welcome surprise - the guy that owns the local Jewish store (Judaica Central) stopped by with a fresh, home-cooked Shabbat dinner for us. How cool! We weren't expecting it, and it was an extremely welcome occurrence. We had just come back from eating Mexican food, so we're looking forward to eating that tomorrow night.

OK. The Yankees just blew yet another game against the Angels (0-2 against them so far this year, with 8 more games. I'm predicting a 2-8 record in these 10 games, which will probably be enough to knock them out of the playoff race for the year) in the 9th inning, I've had a good workout and The Boy is asleep. I've got to stop procrastinating and do some housework.

What a morning...

Don't get me wrong - this was not a bad night, by any stretch. It's just... well, zombifying, to have to get up every two to four hours to change a diaper.

We went to the local concert last night - a 60's British Rock cover band with a forgettable name. I was rather grouchy, having eaten exceptionally poorly on Thursday and not resting nearly enough. After five or six songs - and after The Boy suffered a little bit of a no-reason meltdown, we went back home. He fell asleep for the night approximately twenty minutes after we got home. I was up later, mostly playing Pixeljunk Monsters on PS3, although I spent a little bit of time playing the "Pain" game I downloaded. That one entertained my wife - the premise of the game is that you put yourself into a slingshot and fling yourself at buildings, cars, people, etc. Ouch. I also got a few minutes' worth of schoolwork done.

I changed The Boy at 11, when he woke and realized that he was alone. I went to sleep at midnight and woke at 3 when he started crying again - at 2:57, to be honest, three minutes before the first alarm went off. I changed him and brought him to bed with us, because he was hungry. At 5, my alarm went off, and I woke my wife up (my clock is about four minutes faster than hers) to change him, which she did without waking him. At 7, I tried to change him without waking him, but no dice. We played outside until he pooped 15 minutes later. Sigh. Two diapers in fifteen minutes.

Our eggs went rotten in the fridge, and I can't find the other dozen, so I'll wait until my wife wakes at 9 and go out to breakfast. One of the guys in my barbershop chorus is interning at a summer program in Morristown, and he did a lot of work in their version of Music Man, Jr., so we'll change him at 9 and go out to eat and go see the musical.

Uh-oh... he's going after Mommy. See you soon.